Paralyzed from polio at 18 months old, Heumann has spent most of her life in a wheelchair. From not being allowed access to schools as a child because of her to recently working on a documentary with the Obamas, Heumann has helped make the world more aware of disability rights and needs. In a Brandeis Zoom event on Wednesday, March 23, Heumann discussed her social justice work and her part in making “Crip Camp,” a documentary about a camp designed specially for disabled youth.
“It’s a film that will stand the test of time,” said Heumann. She recalled that she was brought to six different viewings of “Crip Camp” and that at each following discussion, she “heard over and over, ‘how come we haven’t heard this story yet?’”
She explained that she had noticed that a lot of abled people were uncomfortable talking about disabilities and disabled rights. “I think disability is something that many people are fearful of.” She commented that other disabled people felt instantly seen by these types of discussions, but that this subject able-bodied people tried not to think about.
“On reflecting on what social justice means for us in the disability community, we really have to look at disability more deeply, we can’t avoid it,” she said. Disabilities are affecting people, whether permanently or temporarily, our lives change.” She said that “people are really unprepared for changes” that can affect someone’s daily life strongly.
Heumann’s mother was supportive of her child throughout her entire life, said Heumann, something that she was lucky and grateful to have. But, even so, there was something isolating, as she recalled being the only person she knew in a wheelchair—until she went to summer camp.
As she attended a summer camp specifically designed for disabled people, she was able to connect with others who could relate to her particular instances. “Being able to go to camp … as much as I disapprove of segregated education, it was the first time I met other disabled people.” She explained that there was something incredible about “getting to meet those people, and talk about the experiences we were having—there was a visceral understanding.” She detailed that there were some experiences that only disabled encountered—like not being able to enter a building if it didn’t have a ramp, or purposely not drinking water if a place didn’t have an accessible bathroom—so having people relate to her was a novel, and critically important, moment.
Since then, Heumann has not only done the documentary, but has also written two books, both about her advocacy and life experiences as someone who is disabled.
“We need to be looking long term at what we want our communities to look like … for me, the issue of disability in Judaism has slowly been emerging in discussions since the 1980s,” she said. “Jewish Disability Inclusion month has been an important part of sunagnouses and other Jewish institutions to start having these conversations … and more diabled people are now becoming rabbis!” But, she was clear to note, that despite this progress, there is still a long way to go, as these are still relatively new conversations, with accessibility needs still not being met at some synagogues and Jewish spaces that she has been to.
“I find that I do get angry but my biggest emotions are really [about] problem-solving and trying to look at what can be done in order to resolve things,” said Heumann. “It takes a lot to get me really angry … but when I do, watch out.”